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TURP found prostate cancer

MK1965
Posts: 158
Joined: Jun 2016

Hi everyone! I am new on this forum and this is my first post.

Had TURP for BPH treatment on June 1st. On June 8th at my post op visit to my urologist, my wife and I were told that pathology report is back and positive for prostate cancer.

Patology report: ADENOCARCINOMA, GLEASON 6 (3+3) ONE CHIP 4% SURFACE AREA, T1a.

My urologist adviced to wait 3-4 months before we can do biopsy. 

My wife and I were in shock hearing this news.

My last PSA was 0.7 in November of 2015 and I was on Finesteride so urologist multiplied by 2 and said 1.4.

Some more info on PSA: 07/2013 - 0.92, 05/2014 - 8 (ac. Prostatitis) 10/2014 - 1.85, 07/2015 - 1.01.

I am wondering if anyone here with same experience. To wait couple of months is mind tearing and nerve wrecking 

Appreciate any advice on what to do and how to proceed.

 

 

MK1965
Posts: 158
Joined: Jun 2016

Forgot to mention, I am 51 year old.

hopeful and opt...
Posts: 2218
Joined: Apr 2009

I am sorry for your diagnosis. All of us who are diagnosed go through shock and all those negative feelings for the first few months.

Prostate cancer is very slow growing. Waiting a few months for your prostate to heal from the turp before a biopsy is appropriate.

There are differences in prostate cancer diagnosis. A Gleason score of 3 + 3 = 6 in many cases May simply require monitoring and active treatment if necessary. For example I was diagnosed in March 09 with a low volume of Gleason 3 plus 3 equals 6. I have been in an active surveillance program since that time and have not had any active treatment. If you in fact qualify for active surveillance of your cancer Studies have shown that one and still have a treatment that they would have initially chosen if the cancer progresses. Feel free to click my name to the left to see what I have been doing.

You will have an idea of where you stand after the biopsy.

As you are doing it is very important to develop knowledge at this time. This board is a very good place to come to and we will answer any questions that you might have to the best of our ability.

You may wish to ask your doc to send the biopsy slides that you have to a world-class pathologist such as Johns Hopkins or Boswick. Determining Gleason scores are subjective, that's the rationale for the slides to the best of the best. I don't know what your medical coverages but without medical coverage the cost is about 200 to 250

It's important for you to have copies of all your medical records and office visits as you see other doctors who are specialists in various aspects of prostate cancer to include but not limited to radiation surgery and active surveillance.

It is important or your wife to attend any medical visits since this is a couple's disease and it is important to have her input

There a local support groups that are very worth attending foreknowledge and emotional support

There is an international organization called ustoo that sponsor local support groups worldwide so go to this site. Additionally the issue of monthly newsletter called Hot Sheet. These newsletters are informative so go through previous ones

 don't go crazy but read books research the internet.

Once again prostate cancer is very slow growing so try to relax somewhat

You will be fine

 

 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3181
Joined: May 2012

MK,

As Hopeful and Optimistic noted, prostate cancer (PCa) is almost always a very indolent (slow-growing) disease.  Your results indicate very incipient and minimal disease.  I WOULD definitely get the biopsy done, but a two-month wait could not be harrmful.

It is possible that the biopsy will have slightly differning findings from what you have already received, but a huge difference is almost impossible.  I also note that your PSA vector, or doubling-time, indicates virtually no advancement over two years at all.

Get some current (no more than a few years old) books on PCa, and begin learning about the disease.  After the biopsy is finished, use those results to decide on a path for treatment.  The most common options for minimal disease in a young guy like yoursellf are radiation, or Active Survellance.

Knowledge is power. Begin a systematic review. Becoming frantic is counterproductive, and you certainly have nothing to be frantic about.  And AVOID INTERNET research, unless you limit yourself to Academic ones; there is a huge junk science industry hopeing to sell you treatments that have no scientific foundations.  Sloan Kettering Cancer Center, MD Anderson, the Cleveland Clinic, UCLA, Johns Hopkins ---sites like those are great. But stay with reputable names you recognize.

max

VascodaGama's picture
VascodaGama
Posts: 2929
Joined: Nov 2010

MK,

I  was 50 years old when diagnosed with prostate cancer (PCa) in 2000. The sparkling red flag was a high PSA of 22.4. A biopsy revealed the cancer which was classified as Gleason 6.
I went bananas too. I still do not recall how I returned home from the hospital after receiving the news.

I think you received good advices from above posters. The biopsy will be essential to define your next step and treatment options, if needed, so that you have nothing to lose by waiting two months for those results. Meanwhile you can research about the characteristics of PCa, its diagnosis and treatments choices.
You should be aware that therapies involve risks and cause side effects that can prejudice considerably your quality of living. In particular young fellas are the ones “suffering” more because of their long life expectancy period.
You may lose the possibility in fathering a child again.

From the years of my experience and from knowledge obtained in researches on PCa matters, I recommend all diagnosed patients to look into AS (active surveillance) firstly. Treatments follow but these depend on findings from proper exams and diagnosis processes done to each particular case. I also recommend you to get second opinions from separate specialists before proceeding with anything.
Finasteride (5-ARI) does mask the PSA so that doubling the value is common practice to compare the results with the general aspects of diagnoses.

Here are some reading materials that may be helpful for you;

To prepare your own List of Questions+
http://www.cancer.net/patient/All+About+Cancer/Newly+Diagnosed/Questions+to+Ask+the+Doctor

http://www.mayoclinic.org/diseases-conditions/prostate-cancer/basics/preparing-for-your-appointment/con-20029597

A “compendium” on Prostate cancer and care;
http://www.lef.org/Protocols/Cancer/Prostate-Cancer-Prevention/Page-01

Diets against PCa;
http://cancer.ucsf.edu/_docs/crc/nutrition_prostate.pdf

Best wishes and luck in your journey.

Welcome to the board.

VGama

 

MK1965
Posts: 158
Joined: Jun 2016

Yesterday, got results from my Receant prostate biopsy. 1 of 12 cores come back positive Gleason score 7b (4+3) located in left base lateral. My urologist explain all treatment options and suggested RALP surgery as his favorable option to my young age, 51. I plan to get second opinion from reputable urologist in my area. I am myself leaning toward surgery But I am not in a hurry to make decision.

Hope to hear from others with the experience similar to mine.

MK

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3181
Joined: May 2012

MK,

Your biopsy indicates minimal volume but an inermediate level of aggression with the Gleason at 7.

Your urologist might recommend that you see another surgeon, which is fine, but what is most important is seeing a radiation oncologist.  Your disease is almost certainly curable with either, but very generally, radiation has fewer dibilitating side effects. Efficacy between the two treatments for mild first-line treatments is identical: a toss of a coin.

Thoroughness and fairness to yourself demands that you speak with a radiation guy also.

Either should eradicate the disease pretty readily,

max

VascodaGama's picture
VascodaGama
Posts: 2929
Joined: Nov 2010

MK

You doing it well in consulting other doctors for second opinions, you do not need to rush. However, you need to consider specialists from both radicals when deciding on a therapy; surgery and radiation (as commented by MAX). I would even get a second opinion on the biopsy cores from an independent reliable pathologist laboratory (such as at Johns Hopkins). In fact I wonder if your status pairs the "requirements" for Active Surveillance. This would be the best choice for those at young age, providing them with quality living while monitoring cancer progression. Treatment would be done only and when required, if ever. Meanwhile one may as well die of other causes.

Treatments for PCa can look like a walk in the park, easy to perform in fast times and with short convalescence periods but their side effects will be permanent and would jeopardy your quality of life considerably. There are always things that one would accept and live with it but there are those unacceptable, and they have nothing to do with the cancer. Just google this: "Side effects from treatments for prostate cancer".

Another aspect to complete your diagnosis is to obtain an image exam to look for visible involvement in other areas of the prostate and surrounding tissues. The left base lateral zone (positive needle) is close to the Seminal Vesicles that can be seen in a 3T-MRI. The Gleason grade of 4 is the worse in your diagnosis that could influence judgments. It deserves a second look.

Doctors will recommend their trades as the best option, with only positives. Your role will be to inquire on the negatives, and later discuss with your family to decide on something you feel most confident.

Best wishes,

VGama

 

 

 

 

Swingshiftworker
Posts: 1013
Joined: Mar 2010

My standard pitch is to tell all newbies that surgery is absolutely the WORST choice you can make to treat PCa because it presents the greatest risks of debilitating side effects -- primarily ED and incontinence (which can be permanent) as well as other associated risks of surgery, including damge to associated organs (the rectum and bladder, in particular).  Radiation does not  present these problems to the same degree in terms of ED and incontinence and presents very little risk of collateral tissue damage.

BTW, your age is irrelevant.  Urologists often "sell" surgery as an option for "younger" men because they can better endure the physical trauma of surgery but, if you don't have to endure those effects at all, why bother doing so?   Your age shouldn't matter in terms of which form of treatment you choose.  You should just choose the treatment that offer you the best potential results with the least possible side effects regardless of your age.

As max points out above, the effectiveness of surgery and radiation is essentially the same BUT, as I point out, the risks of surgical side effects far exceeds that of radiation.  Also, if surgery fails, as it often does,  you will have to get follow up radiation treatment.  Followup raiation after a failed radiation treatment is also possible but, frankly, I've seldom heard of a radiation treatment that has failed.  Beyond that hormone therapy and chemo therapy would be later options depending on the course of the cancer.

The most precise method of radiation treatment currently available is CyberKnife (CK) which is a form of SBRT (stereotactic body radiation therapy).  It can deliver radiation to the sub-mm level of accuracy and can adjust for movements in the body and organs, which all but eliminates any possibliity of ED or incontinence.  I had the treatmet 6 years ago and had no side effects whatsoever and am in remission.   Other men who have had the treatment have reported similiar results here.

So, I would suggest you speak with a radiation oncologist and ask him specifically about CK as well as the other more common radiation treatments, including but not limited to IMRT, IGRT ad BT before you make a final decision about your course of treatment.

Good luck!

 

 

Swingshiftworker
Posts: 1013
Joined: Mar 2010

My standard pitch to newbies is to warn them NOT to choose surgery for treatment of prostate cancer because it presents the greatest risk of side effects -- namely ED and incontimence, which can become permanent-- as well as other risks commonly associated with surgery, including infection and injury to adjoining organs such as the bladder and rectum.   While there is some risk of these things from radiation treatment, that risk is very small in comparison.

Also, if the surgery fails, as it often does, you will have to resort to radiation as a follow-up treatment.  While radiation can fail as well, I have not heard of as many radiation treatment failures, as I have surgical failures.  So, if you may have to get radiation anyway, why bother with surgery, especially if the risks of surgery and it's negative effects on your quality of life are so much greater?

The same thinking applies when you consider that the effectiveness of surgery and radiation as a form of treatment is bascially equal.  Again, why subject yourself to the risks of surgery when radiation treatment will be equally effective without such risks?  That never made any sense to me.

BTW, your age should also be irrelevant to your treatment choice.  Urologists often try to "sell" surgery as the method of treatment to "younger" men because they are supposedly better able to endure the physical trauma of surgery but why bother subjecting yourself to the trauma of surgery when it is unncessary?  That also never made any sense to me.

And BTW, did your urologist mention that your penis will retract after the surgery?  This happens because when they remove the prostate (which is situated between the bottom of the bladder and the interior end of the penis which attaches to the bottom of the prostate) they have to reattach the interior end of the penis to the bottom of the bladder and, in doing so, the penis is retracted into the body about 1-2" making up the space previously occupied by the prostate.   Your penis technically isn't "shorter" but what you can see of it certainly will be.

Also, FYI, there are 2 urinary spincters involved in the operation.  There is one at the bladder and one at the interior end of the penis.  The one at the bladder is normally preserved and the one at bottom of the prostate is usually lost, which means you only have one urinary sphincter left -- the top one -- which is why incontinence is so common following surgery and continues until your body learns how to control urinary flow with just the one remaining.  However, if the bladder spincter is damaged in the operation, or if normal urinary control cannot be achieved, incontinence can become permanent and you may have no recourse except to have an artificial urinary sphincter implanted.   None of this is an issue in radiation treatment.

As for radiation, the most accurate method of radiation treament for PCa currently available is CyberKnife, which is a form of SBRT (stereotactic body radiation therapy).  It can deliver radiation in 360 degrees to the sub-mm level of accuracy and can adjust for body and organ movement during treatment.  This all but eliminates any possibility of collateral tissue damage, ED and incontienence.  I was treated w/CK 6 years ago and am in remission.  The treatment was done in 3 visits in a week and I had absolutely no side effects whatsoever.  A number of other men have reported similiar experiences online here.  Recovery from surgery typically takes 6-12 months; sometimes longer.

So, I strongly recommend that you consult with a radiation oncologist and ask him about CK as well as all of the other standard radiation treatments available including (but not limited to) IMRT, IGRT and BT.  You should also do research on these methods of treatment yourself online before you speak w/a radiation specialist.  All of the information you need is available there.

Whatever you do, DO NOT rush to subject yourself to surgery before you fully consider the other options.  Good luck!

MK1965
Posts: 158
Joined: Jun 2016

Just want to update with new findings. Had biopsy on August 11th with more Ca found. Now, I have Gleason 7b (4+3) so I have to take care of this. Comparing to incidental finding after TURP , Gleason 6, this biopsy showed more serious cancer 1 of 12 cores positive left base lateral 4+3. Had bone scan today.

eliz928
Posts: 7
Joined: Jan 2003

I came across your post. My husband is also recently diagnosed with 1 of 12 cores positive @ 10%,  Gleason 7 (4+3). we live in Tampa and have access to MOffitt where i was a 2 time BC survivor. I echo the others on this board: get 2 and 3rd opinions on your options. I will say that our research has turned up slightly different results (I've been hitting every site, every publicaiton, etc. for the past 3 months). Your young age makes side effects very important. My husband just turned 59 last saturday and that's what concerns him as well. My concern is having him around for another 30 years! Anyway best of luck and know that you will be fine. Whatever you do, make sure your doctor has EXTENSIVE and EXCLUSIVE experiance wtih Prostate cancer. In our case, for examples, all these guys and gals do is cancer, and the radiation oncologist and the surgeon (who is the head of the GU clinic) only do prostate cancer. Surgeon has done over 4000 prostatectomies, 2000 of them robotic. Rad. Onc. is welll respected and experiened as well. Neither of them tried to talk us into his spec. and told us the cure rate is the same for both.

VascodaGama's picture
VascodaGama
Posts: 2929
Joined: Nov 2010

Bone scan will add information to the diagnosis, most probably with a negative result (nothing found in bone), but I would recommend you to get one of those newer image exams using better contrast agents before deciding on a treatment. Google this sentences: 68ga PSMA PET and F18 CHL PET/CT and talk with your doctor.

At 51 you are risking your quality of life in your decisions. Be wise and do things coordinately and timely.

VG

MK1965
Posts: 158
Joined: Jun 2016

VG, 

i do not know how you guys can get all of this very expensive exams? I am not a royalty and my insurance covers bare basic. I barely got nuc med bone scan and that is it. I am referred to see radiation oncologist and insurance covers only EBRT. My choice is non egsisting. No new technology like SBRT, HIFU or FLA are covered under my insurance. For me does not help to do any research on list SE because I have to go with what is covered.

Old Salt
Posts: 720
Joined: Aug 2014

SBRT may be considerably less expensive than EBRT, mostly due to the fact that far fewer sessions are required. Your out-of-pocket cost may be another matter, but it's worth contacting your insurance company.

VascodaGama's picture
VascodaGama
Posts: 2929
Joined: Nov 2010

MK

You are not alone. In fact I am not aware of an insurance that covers all types of treatment, tests or exams, in particular those "technologies" still considered investigational. Not even the European national health services (with big pocket$) that provide free health care would accept expensive modalities if cheaper ones manage to "satisfy" the requirements (their policies not the patient). We patients have to be aware and try finding the means to have the best within available systems or became rich. Young fellas should be wise in these respect as they will confront medical problem while aging.

I would recommend you to do some investigation on the matter. The doctors we consult are good sources to procure those "specials". Many of them have sort of agreements with insurances that would cover a particular exam or treatment typically not included in the policy. Another source for free-of-charge therapies are clinical trials testing those newer "technologies", that apart from being free of charge they include a long period of care of the participant by the team studying the technology. This can last two to five years of free exams while they investigate the benefits.

Exactly one of those "state of art" PET exams is now on trial to which you could try to apply. Please read these links from a comrade in this forum who is benefiting from a free Ga68 PSMA PET scan that located the cancer now to be attacked by EBRT;

https://csn.cancer.org/node/303009

https://csn.cancer.org/node/304131

Clinical trials are regulated by laws under a government affair, free of charge, safe and executed in modern appropriated facilities, by experienced doctors. You can rely on the system but to access it may need some skills. The best is always via our doctor if he is or knows of some one involved in the trial, and if he would accept your wish without bother.

Some universities also run clinical trials. Hopeful above is participating in a clinical trial for Active Surveillance which modality I see it appropriated to you with only one positive core. You can contact him or read his story in here;

https://csn.cancer.org/user/99828

Another comrade in this forum managed a treatment free of charge at the Huntsman Cancer Institute at the University of Utah. In his case he benefited from Hormonal treatment which would involve radiation therapy if he wanted (?). It all depends on discussions between the doctor and patient. You can read his story here;

https://csn.cancer.org/node/302660

https://csn.cancer.org/node/302836

You can read about clinical trials in here; https://clinicaltrials.gov/ct2/results?term=prostate+cancer&Search=Search

I hope this post is of help to you. Never give up in trying to obtain the best.

VGama

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3181
Joined: May 2012

Nationwide, your situation in the US is the norm, Mk, not the exception.

Despite very public changes in recent years in insurance policy, many millions still have no (zero) form of medical insurance.  I have several relatives, middle aged adults, who have no insurance at all today, in September, 2016. Many of these hold graduate degrees, one has an MBA.

According to Gallup, as of  First Qurter 2016, 11% of all Americans have no insurance at all. { 315,000,000 x .11 = 32,650,000 }  I had excellent private insurance before the Affordable Care Act went in to effect. I still have this private insurance, but the price has gone up about 20% annually; I am still searching for the "affordibility" aspect of all this.  Among people with some form of insurace, many millions more cannot afford deductables and associated expenses.

EBRT is as good and effective as SBRT anyway; SBRT is more convenient, and has slick marketing, but is not more curative, so be thankful for the EBRT that you are privy to -- many men aren't.  Of course, tens of millions of people in many parts of the world will never have access to even an x-ray, or even antibiotics.  I have known a half-dozen or so individuals who were dying and eventually travelled the nation to locations like Sloan-Kettering and MD Anderson.  Every one of them was told they were terminal (and in fact have since died), and that the acclaimed institutes would have used the same treatments that they had received at their local or regional cancer clinics.  Only one of these had PCa; a cousin stricken with Stage IV PCa in his 40s.  He passed as an inpatient at MD Anderson before he reached 50.  Others had leukemias, Breast, and other organ cancers.

 I hope your radiation oncologsit will have good news for you,

max

Clevelandguy
Posts: 391
Joined: Jun 2015

Hi,

Talk with both your urologist & a radiologist, they will both have plenty of options for you, get the most experienced doctor you can find.  Look up all the info you can on your probable types of treatment and then make a decision.  It's a shame that medical coverage has to play into your decisions.  I chose surgery and do not have regrets,  but others might chose radiation or wait & see.  Be wary of people that steer you towards one type of treatment(professional or otherwise), its your body, you make the choice.  There are side effects with every type of treatment except wait & see(results vary by doctor and type).   Good luck

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